Just curious...

[Gnusgal]

I'm just curious as to how many people on this forum have congenital heart defects. I am involved in several other online support systems for CHD, pacemakers, and other things, but was wondering how many of you are also CHDers. Except on the CHD forums I tend to feel like one of the youngest of the bunch (I'm 25), and also wanted to know if there are other "young-'uns" as well.

I'm loving that I found you guys!

 

[JimL]

I was talking last week with the local undertaker, with whom I've worked often in the past, and he said I look ten years younger than I did last year. This spring, I told one of my favorite nurses, Susie, that I felt like I was celebrating my 35th birthday. I don't know if that wishful thinking qualifies me as a "young-'un," but I had a congenital heart defect.
Curiously, somewhere along the way last fall I was assured that the damage in my heart was consistent with rheumatic fever. There is no record that I ever had rheumatic fever, and I've known about the CHD since age four, before the normal age for rheumatic fever.

 

[Jean]

I HAD a congenital heart defect...a bicuspid aortic valve. It did a pretty good job...never even knew about it until about 36. It finally gave up more or less at 56. I am all new now with a homograft put in in Jan. '00. Doing fine and feel strong and younger than I can remember!

 

[Mara]

I had a congential heart defecet. Bicuspid aortic valve. Diagnosed at about age 4. I don't know if I qualify as a young-un I just turned 35, although I still feel 17. Some would say I still act 17.

-Mara

 

[hhardt]

Defects

Defects

I had a congential heart defect. Bicuspid aortic valve, which I did not know about. They found it during the operation.

 

[jackc]

Just curious...

I too have a bicuspid aortic valve which was just recently discovered ( age 60 ) during a TEE checking for other vascular problems in the carotid and coronary arteries.

My surgeon checked it out during a bypass operation and determined it was functioning well and he left it alone. It will be monitored for my remaining days to determine if AVR is required.

I thought it rather ironic that nobody found the anomaly since I was (am) very active and have had several physicals where heart was checked and several echos and stress tests in the last ten years following a heart attack in 1993.

jackc (welland )

 

[martha]

I also had congential heart defect. A bicuspid valve, that I didn't know about until l was I was 36. At that time they told me not to worry about it. When I was 49 I had it replaced with homograph. What a difference it makes.... martha

 

[wlaldridge]

It seems that most of these valve disorders are linked to some congenital defect. They think mine is bicuspid just because bicuspids are more prone to stenosis due to calcification. Correct me if I am misinformed.

When I asked the cardio, during the cath, if it was in fact bicuspid, he said he could not tell and he knew all he needed to know about that valve from the echo. He is really down on my poor old valve just because the calcium deposits have it down to .61 cm sq. cross sectional area as calculated from the echos.

 

[Kevin M]

Just so you know, you can post a poll and everyone can vote to show their answer. The poll option is at the bottom of the window when you want to post a new thread.

I think it's interesting to find out this sort of thing.
If you decide you want to try it and you need a hand let me know.

I too was congenital. Bicuspid Aortic Valve.

Kev

 

[Gail in Ca]

My surgeon looked at my leaking mitral valve during my last surgery. He couldn't repair it, he left it alone for now. He said it was odd looking and thought it might be congenitally deformed.
Before that I was just told I had mitral valve prolapse.
Gail

 

[RonP]

Another Young One!

Another Young One!

Hey Niki:

Yes, there are several of us young ones here. I'm only 51.

I did notice you have had four pacemakers installed. I'm on my first. Should I be expecting future problems in the pacemaker area too? I've already had the aortic valve replaced and a Guidant Pacemaker and Defibrillator put in.

What happened on your pacemakers? Update me please. Then I'll know what to watch for.

Thanks,

RON P.

 

[Gnusgal]

pacemakers

pacemakers

The reason I'm on my 4th pacer is because the batteries don't last forever. As they start to run down you will have more frequent checks and then it will get to a certain point where insurance deems it okay to switch out. The switch is very easy. They don't usually have to do anything with the leads, and leave them alone. Instead they just detatch the old pacer and pop in a new one. These days it is done as outpatient surgery. Really, it's no big deal.

Now with me, I use my pacer 100% of the time. So my batteries drain pretty quick (5 years this last time). Everyone is different, but they can now tell you aprox. how long it should last at your regular pacer checks. The computer figures out how much juice is left, and based on how fast you've been using it, calculates how long it SHOULD last. But still be sure to get those checks. This last time, I was having the checks, but was trying to make it to the end of the school year (I'm a teacher), so we put it off a bit longer than we should have. My pacer went into "back up" mode (60bpm, nothing more, nothing less) and I had to go into the hospital overnight instead of outpatient. I don't reccommend back up mode.

 

[Scottie]

Me too !

Me too !

I was a congential heart baby ...born in 1960 with TOF ....can you work it out ?LOL...the grand old age of 42 !!!!!
Scottie

 

[Mb]

My husband had two valves installed, due to rheumatic fever when he was 19. Three of his other brothers had rheumatic fever at the same time, all hospitalized. He is the only one who incurred heart damage. He was told at the time, that the valves had been damaged. His other brothers are younger than he is, so it will be interesting to see if in the next 5 years or so, if they develop problems.

Just thought I would post something other than a congenital, cuz I was getting the impression that MOST of the valvers here were congenital!!!!

Marybeth

 

[CHRISE]

re: To Gnusgal

re: To Gnusgal

Hi... Ya gotta "young-in" right here. 23yrs. old. I was born with congenital defects and have had problems ever since and also have a defib/pacemaker in my chest... loads of fun! you know the deal....

feel free to drop a line, i just figured i would cause your not alone on feeling young sometimes when it comes to the heart stuff

take care

Christine

 

[Paula G]

I too had a congenital bicusip aortic valve. A heart murmur was mentioned to me in my 20's by my OB-GYN. Not much said about it. Then in my late 40's, my then GYN mentioned the murmur again and suggested that I say something to my primary physician. He referred me to my present cardiologist at the Sanger Clinic in Charlotte. After an echo, he did a TEE to determine the cause of the leaking valve.

I had an annual echo for four years. There was a gradual enlarging of my left ventricle, but I guess I got very complacent before my annual checkup. So it was rather a shock last summer when he said it was indeed much worse. My surgeon, Dr. Larry Watts, said I might wait a few years for surgery but my overall health would surely decline and the surgery would be riskier. I didn't get any other opinions going on his and the Sanger Clinic's reputation. So at 54, I now have my super duper leaking St. Jude valve. Can't wait until Nov. when I see my cardiologist again. He wants to do an echo every six months and a TEE yearly to watch my loose stitch!! I really hate the TEE's. The first one I had, there was not enough medication. So when my cardio wanted to do one this May, he promised to do better. I remember nothing. Just the way I like it. Just hate missing a whole day of work plus dragging my husband along to get me home.

Well, obviously, congenital bicuspid valves are not rare.

Paula G.
St. Jude AVR
08-21-01

 

[Sunshine susan]

Young is as young does!

Young is as young does!

Howdy--I am yet another here who was born with a bicuspid aortic valve which went basically undiagnosed (called a "functional murmur" that I would outgrow) until I was just about half a century (now THAT sounds old). Even though I was asymptomatic, it had progressed such that it required immediate surgery. And I was one that hardly ever had a cold so the prospect of open heart surgery was rather daunting! So I am now a "bionic woman" sporting a shiny St. Judes. I do everything I ever did before but with so much more gusto! Life IS grand! Susan

 

[RonP]

Congradulations

Congradulations

Susan:

We're happy to see your "great" attitude for that's what keeps one going. Never let the world take that from you.

Even with the St. Jude valve, we are only as good as we wish to be for it's all in the attitude. Life is precious so do enjoy it to the fullest.

RON P.